DYSAUTONOMIA: The Story of My Illness - Revised

(I am having a really difficult time right now, so I picked this post that I wrote back in July of 2009 to revise and update for everyone to read again. I'm hoping it will help my newer readers understand my illness a little better and, hopefully, refresh the minds of those who have been following me since the beginning.)

I thought I'd take the time to write a post to try and explain exactly what my illness is and hopefully do it in a manner in which you can understand it better.

In 2007, I was diagnosed with a very rare neurovascular disease that has greatly affected my life and the lives of my family. It is so very rare that most physicians have never even heard of it. However, I was very blessed to be referred to an amazing cardiologist who was very familiar with the disease and recognized the symptoms right away! That is almost never heard of.

The disease I have is called Dysautonomia, or sometimes Postural Orthostatic Tachycardia Syndrome (POTS), with Reflex Syncope. It is a disease of the autonomic nervous system. In my case, it causes very frequent syncopal episodes (fainting/unconsciousness). I have had HUNDREDS of syncopal episodes since becoming sick in 2007.

In case you are not familiar, the autonomic nervous system controls the bodily functions you are not consciously aware of like your blood pressure, pulse, respiration, temperature regulation, perspiration, salivation, urinary and gastrointestinal function, etc. Since my autonomic nervous system is not working properly, it results in a reduction in the ability of my heart and circulatory system to compensate for the changes in posture which causes extreme dizziness and often syncope (fainting) when I stand, especially if I stand suddenly or for more than a few minutes, often just seconds.

When you stand, your body should adjust to the affects of gravity on your body and compensate for that. For some reason, mine does not compensate well. When you stand, the vessels in your legs and abdomen should constrict so that blood and oxygen gets to your heart and brain adequately. For me, when I stand, the vessels, particularly veins, become unnaturally dilated, causing blood to pool (get caught) in my legs and abdomen. Therefore, my heart beats way too fast in an effort to make up for the reduced blood volume transferred by each beat. This quickly results in my blood pressure dropping incredibly low and at that point I usually pass out due to the lack of oxygen to my brain.

Once I am lying on the ground, I eventually regain consciousness when the oxygen becomes adequate again. This can be anywhere from a couple of seconds to 10-15 minutes. Often while I am still unconscious, I will have seizure-like activity such as jerking of my extremities, loud snoring, drooling, sweating and sometimes incontinence. A couple of years ago, I had several tests and was told that it was not epileptic-type seizures and that they did not know what it was. However, later I was told that it is a response due to lack of oxygen to the brain. This is thought to be Reflex Anoxic Seizures or, in other words, seizures caused by lack of oxygen to the brain.

There are TONS of other symptoms that go along with this disease but the situation above is the most major one for me. Some others include :

* Syncope (fainting) or near-syncope
* Falls
* Hypovolemia (dehydration/low blood volume)
* Tachycardia (elevated heart rate)
* Hypotension (Low blood pressure)
* Pain
* Extreme fatigue and weakness
* Delayed gastric emptying
* Nausea/Vomiting
* Diarrhea/Constipation
* Chest pain and palpitations
* Dizziness, lightheadedness, vertigo, disequilibrium
* Migraines
* Loss of temperature regulation - intolerance to heat/cold
* Sleep disorders
* Small Fiber Neuropathy
* Cognitive impairment/brain fog/memory loss
* Fever/Chills/Flushing
* Noise/light sensitivity
* Visual disturbances
* Tremors

It is thought that I have probably had this since childhood but it became active in 2007 after I had myriad medical issues in late 2006 and early 2007. In September 2006, I had multiple treatments for a failed root canal. None of them worked so I ended up having the molar extracted the week before Christmas. The extraction not only dry-socketed but opened a hole into my sinus cavity. This needed to be repaired surgically but it was during Christmas and everyone was on vacation, plus I was scheduled for abdominal surgery in January. In January, I had surgery for endometriosis, bladder sling placement and hernia repair. After recuperating from that, the surgery to repair the hole in my sinus was scheduled for March. I had that surgery and everything went well until I developed Pericarditis (inflammation in the sac that surrounds the heart caused by an infection) in July. From that point on things began to go downhill very quickly. I began to experience all kinds of symptoms as listed above. That is when I was sent to my cardiologist, Dr. Olubi. After the first couple of visits, she started to suspect POTS. She then scheduled me for a Tilt Table Test and the diagnosis was confirmed a few weeks later.

There is no known cure for my illness, all they can do at this time is treat the symptoms. I am currently going back and forth to Vanderbilt University Medical Center for treatment. They are the leading research facility in the world for this disease. I have been three times so far and I am really pleased with the staff there, especially my doctor. However, even with treatment, I am basically home-bound and bed/recliner-ridden as I can't walk very far without the fear of passing out and injuring myself.

In September of 2008, I had a port placed in my chest in order to receive IV fluids on a regular basis. This helps to keep my blood pressure at a more suitable level. The port was truly an answer to prayer because I have really poor veins. However, since having that initial port placed, I have had several severe bacterial infections that either originated in the port or ended up there. Each time, I have developed acute sepsis and spent at least 7-10 days in the hospital. On 2 occasions I have had to have the port removed and be completely free of any infection before they could place a new port. I have written more about this in these posts:

SICK AND TIRED OF BEING SICK AND TIRED

MY MOST RECENT HOSPITAL STAY

ENDURING SEPSIS with Dysautonomia Part 1 of 2

ENDURING SEPSIS with Dysautonomia Part 2 of 2

I know this is a lot of information and a lot to digest. I am still learning about it and so are the doctors! I do not mind talking about it, so if you have any questions, please feel free to ask me. My family and I would also really appreciate your prayers. Even though there is no known cure at this time, we know our God is a BIG, BIG God and that through Him, all things are possible!

Philippians 4:13

Thanks for stopping by. I'd love to know you've been here so please leave a comment and let me know! See ya soon!

Blessings,

Teresa

P.S. For more interesting posts about my illness, my MUST READS are a great source of information!

DYSAUTONOMIA: MY FREQUENTLY ASKED QUESTIONS PART 2

Please note: If you have not read PART 1 in this series, please click on the following link to do so before reading this post. It will make a lot more sense that way! :0)

PART 1 Questions 1-4

5) WHAT EXACTLY IS THE AUTONOMIC NERVOUS SYSTEM?
The Autonomic Nervous System (ANS) is the part of the central nervous system (CNS) that regulates the bodily functions that occur without conscious effort. For example: respiration, pupil size, heart rate, blood pressure, temperature regulation, digestion, salivation, blinking, etc.

6) WHAT ARE SOME OF YOUR SYMPTOMS?

There are so many different symptoms of Dysautonomia and, often, they are mistaken for other illnesses. Here are some of my symptoms:

* Syncope (fainting) or near-syncope
* Falls
* Hypovolemia (dehydration/low blood volume)
* Tachycardia (elevated heart rate)
* Hypotension (Low blood pressure)
* Pain
* Extreme fatigue and weakness
* Delayed gastric emptying
* Nausea/Vomiting
* Diarrhea/Constipation
* Chest pain and palpitations
* Dizziness, lightheadedness, vertigo, disequilibrium
* Migraines
* Loss of temperature regulation - intolerance to heat/cold
* Sleep disorders
* Small Fiber Neuropathy
* Cognitive impairment/brain fog/memory loss
* Fever/Chills/Flushing
* Noise/light sensitivity
* Visual disturbance
* Tremors

7) WHEN DID YOU FIRST BECOME ILL AND HOW LONG DID IT TAKE FOR YOU TO BE DIAGNOSED?

It is thought that I have probably had this illness since childhood but it became active in 2007 after I had a host of medical issues in late 2006 - early 2007. In September 2006, I had multiple treatments for a failed root canal. None of them worked so I ended up having the molar extracted the week before Christmas. The extraction not only dry-socketed but also opened a hole into my sinus cavity. This needed to be repaired surgically but it was Christmastime. All the dental staff was on vacation, plus I was scheduled for abdominal surgery in January, so I had to wait. In January, I had surgery for endometriosis, a bladder sling placement and an umbilical hernia repair. After my abdominal surgery and subsequent recuperation, the surgery to repair the hole in my sinus was scheduled for March. I had the sinus repair surgery. Everything was going well until I developed Pericarditis (inflammation caused by an infection in the sac that surrounds the heart) in July. From that point on, things began to go downhill quickly. I began to experience all kinds of symptoms as listed above. That is when I was sent to my cardiologist, Dr. Olubi. After the first couple of visits, she started to suspect POTS. She then scheduled me for a Tilt Table Test and the diagnosis was confirmed a few weeks later. I was very blessed to have found a wonderful doctor quickly after my symptoms presented!

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8) WHAT KIND OF TREATMENTS HAVE YOU TRIED AND HAVE THEY WORKED?

Lifestyle Changes - I have made some very necessary lifestyle changes - increasing fluid and salt intake, eating smaller, more frequent meals and keeping snacks handy in case my blood sugar drops. I also must limit exposure to loud noise, bright lights and temperature fluctuations.

Compression Hose - I tried wearing the waist-high compression hose (30-40 mmHg), however, that was not very successful due to the extreme difficulty in getting them on and off. Plus, you are only supposed to wear them when you are up walking around and I am not able to do that much.

Medication - I have tried all kinds of medications, none of which have worked at all for me OR I have had some kind of bad reaction to it. (Atenolol, Propanolol, Midodrine, Florinef, and Wellbutrin to name a few.)

IV Hydration - IV fluids have been the most beneficial treatment for me out of everything. The fluid helps keep my blood volume up and that helps keep my blood pressure up. I usually take a liter of fluid a few times a week -- depending on how I'm feeling. However, due to the length of time I've had to have IV access, I ultimately had to have a port -a-cath placed in my chest about a year and half ago. Since that time, I have had several very serious bacterial infections that have either started, or eventually ended up, in my port. Each time this happens, it is an extremely dangerous situation and I spend an average of a week to 10 days in the hospital. I've now had a total of 3 different ports due to the infections. This treatment option must not be considered lightly.

Thanks for stopping by again. I hope you will check back for Part 3!

Blessings,

Teresa